Privacy Tools: Opting Out from Data Brokers

By Julia Angwin
ProPublica, Jan. 30, 2014

Data brokers have been around forever, selling mailing lists to companies that send junk mail. But in today’s data-saturated economy, data brokers know more information than ever about us, with sometimes disturbing results.

Earlier this month, OfficeMax sent a letter to a grieving father addressed to “daughter killed in car crash.” And in December, privacy expert Pam Dixon testified in Congress that she had found data brokers selling lists with titles such as “Rape Sufferers” and “Erectile Dysfunction sufferers.” And retailers are increasingly using this type of data to make from decisions about what credit card to offer people or how much to charge individuals for a stapler.

During my book research, I sought to obtain the data that brokers held about me. At first, I was excited to be reminded of the address of my dorm room and my old phone numbers. But thrill quickly wore off as the reports rolled in. I was equally irked by the reports that were wrong — data brokers who thought I was a single mother with no education — as I was by the ones that were correct — is it necessary for someone to track that I recently bought underwear online? So I decided to opt out from the commercial data brokers.

View the full article here, Privacy Tools: Opting Out from Data Brokers and get a list of the names of companies that track your information, links to their privacy pages, and instructions on how to opt out.

 

 

Brokers Trade on Sensitive Medical Data with Little Oversight, Senate Says

“Marketers maintain databases that purport to track and sell the names of people who have diabetes, depression, and osteoporosis, as well as how often women visit a gynecologist, according to a Senate report published Wednesday.

The companies are part of a multibillion-dollar industry of “data brokers” that lives largely under the radar, the report says. The report by the Senate Commerce Committee says individuals don’t have a right to know what types of data the companies collect, how people are placed in categories, or who buys the information.

The report came in advance of a committee hearing on industry practices Wednesday afternoon.

The report doesn’t contain any new evidence of wrongdoing by the industry, but it underscores the tremendous increase in the sale and availability of consumer information in the digital age. An industry which began in the 1970s collecting data from public records to help marketers send direct mail has become an engine of a global $120 billion digital-advertising industry, helping marketers deliver increasingly targeted ads across the web and on mobile phones.”

To view the full article please visit: Brokers Trade on Sensitive Medical Data with Little Oversight, Senate Says

The Truth About HIPAA – It Hasn’t Changed

Everyone thinks HIPAA protects personal health data. It doesn’t.

The most valuable data collected and sold by US “data brokers” is sensitive personal health information.

US “data brokers” capture sensitive health information by tracking our searches, social media, phone apps and GPS data. The majority of US healthcare institutions, health-related state and federal government agencies, and health technology vendors are also “data brokers”.

HIPAA gave millions of hidden institutions, healthcare providers, and technology vendors the right to control, use, and sell our medical records, prescriptions, lab tests, claims data, and more. HIPAA gave them the right to be “data brokers”.

If the President’s Consumer Privacy Bill of Rights (CPBOR) was the law of the land AND also was applied to the healthcare system, patients could control who collects and uses health data—not “data brokers”.

The CPBOR’s strong new rights to control the use of personal data could end the use of data for discrimination in every area of life, including  jobs, credit, mortgages, and opportunities.

The EU got it right:  no government agency or corporation in the EU can collect, use, or sell personal data without permission.

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This blog was written in response to the following article: Senators call for consumer privacy protections

 

Re: PNAS study on predicting human behavior using digital records

Picture a box with 2,000 or 10,000 puzzle pieces inside—any one puzzle piece reveals nothing about the picture. But when all the pieces are assembled, an incredibly detailed picture FULL of information is created.

The data mining industry—including Google, Facebook, Acxiom and thousands more unknown corporations and foreign businesses—assembles the puzzle of who we are from thousands of bits of data we leave online. They know FAR MORE than anyone on Earth knows about each of us—more than what our partners, our moms and dads, our best friends, our psychoanalysts, or our children know about us.

The UK study shows how easy it is for hidden data mining companies to intimately know us (and sell) WHO WE ARE.

Most Americans are not aware of the ‘surveillance economy’ or that data miners can easily collect intimate psychological and physical/health profiles of everyone from online data.

The study:

  • “demonstrates the degree to which relatively basic digital records of human behavior can be used to automatically and accurately estimate a wide range of personal attributes that people would typically assume to be private”
  • “is based on Facebook Likes, a mechanism used by Facebook users to express their positive association with (or “Like”) online content, such as photos, friends’ status updates, Facebook pages of products, sports, musicians, books, restaurants, or popular Web sites”
  • correctly discriminates between:
    • homosexual and heterosexual men in 88% of cases
    • African Americans and Caucasian Americans in 95% of cases
    • between Democrat and Republican in 85% of cases
    • For the personality trait “Openness,” prediction accuracy is close to the test–retest accuracy of a standard personality test

The “surveillance economy” is why the US needs FAR STRONGER LAWS at the very least to prevent the hidden collection, use, and sale of health data, including everything about our minds and bodies, unless we give meaningful informed consent.

This urgent topic, ie whether the US should adopt strong data privacy and security protections like the EU—will be debated at the 3rd International Summit on the Future of Health Privacy June 5-6 in DC (it’s free to attend and will also be live-streamed). Register at: www.healthprivacysummit.org

Nearly Half of U.S. Adults Believe They Have Little To No Control Over Personal Info Companies Gather From Them While Online

To view the full article, please visit Nearly Half of U.S. Adults Believe They Have Little To No Control Over Personal Info Companies Gather From Them While Online.

No surprise, 80% of US adults do NOT want targeted ads. 24% think they have no control over information shared online.

How will US adults feel when they learn they have no control over sensitive electronic health information? Despite the new Omnibus Privacy Rule,  there is still no way we can stop our electronic health records from being disclosed or sold.  The only actions we can take are avoiding treatment altogether or seeking physicians who use paper records and paying for treatment ourselves. No one should be faced with such bad choices. There is no reason we should have to give up privacy to benefit from technology.

Today, the only way to prevent OUR health information from being disclosed or sold to hidden third parties is to avoid electronic health systems as much as possible. That puts us in a terrible situation, because technology could have been used to ensure our control over our health data. The stimulus billions can still be used to build trustworthy technology systems that ensure we control personal health information. Institutions, corporations, and government agencies should not control our records and should have to ask us for consent before using our them.

Quotes:

  • -”45% of U.S. adults feel that they have little (33%) or no (12%) control over the personal information companies gather while they are browsing the web or using online services such as photo sharing, travel, or gaming.”
  • -”many adults (24%) believe that they have little (19%) to no (5%) control over information that they intentionally share online”
  • -”one-in-five (20%) said that they only minimally understand (17%), or are totally confused (3%) when it comes to personal online protection”
  • -”When asked under what circumstances companies should be able to track individuals browsing the web or using online services, 60% say this should be allowed only after an individual specifically gives the company permission to do so.”
  • -”Just 20% of adults say that they want to receive personalized advertising based on their web browsing or online service use, while the large majority (80%) report that they did not wish to receive such ads.”